Investigational

Thursday, August 3, 2017

Seminarian Isabel Call reflects on the UUA General Assembly’s decision to change our public advocacy campaign’s name from “Standing on the Side of Love,” possibly to “Answering the Call of Love,” in light of learning to live with her own physical disability. It is an exciting time in the UUA, as we commit to study and conversation about replacing the words “prophetic women and men” with “prophetic people” in the second source of our living tradition and adding an eighth principle about Beloved Community, explicitly committing to dismantle racism and other oppressions. But becoming more inclusive of those who are not white, temporarily able-bodied, or compliant with binary gender norms is not just about institutional change. It's personal. Isabel shares her story to inspire each of us to answer the call to love in our own unique body.

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A few months ago I visited a Unitarian Universalist church where I didn't know many people. When I walked in, the greeter said, “is there something wrong with your leg?” I didn't know how to respond, because I am not, at all times, ready to fit myself in a box: right or wrong, injured or healthy. The story about why I walk in a way that surprised this stranger was not at the front of my mind. Nor did I want it to be.

How can we be deeply welcoming at the thresholds of our churches and communities? Not greeting people with a request for information about what's wrong with them is a start, but it's a pretty low bar. A true welcome comes from a different kind of curiosity. Our free and responsible search for truth includes understanding who is on the path with us, because who they are is part of the truth. Respecting their search for truth, we create a space for them to tell their stories.

And we learn so much when someone shares their story, especially when their life experience is very different from our own. The miracle of deep listening and being heard is why we celebrate diversity in UU communities.

Of course, we're often frustrated that we don't have greater diversity.

I imagine the greeter at the church I visited was frustrated when I didn't share my story.

Being different often draws unwelcome and unwelcoming attention, especially if you seem to be in a minority. Having a physical disability often draws me into a story that's not my own, a story of tragedy. A little over a year ago, I had a serious injury that broke several vertebrae and a leg, and punctured my lung. My spinal cord was injured and now my nerves send mixed signals to muscles all over my body, which makes it difficult to walk or move quickly. That may be permanent. In the hospital, I had a breathing tube for several weeks and my vocal cords were injured, which affects my speaking and singing voice. That may be permanent. I am no longer temporarily able-bodied.

These are true parts of my life story, but they are not the truth I'm here to search for. The eminent scholartivist Baba Ibrahim Farajaje, who died just before my entrance into disability but still teaches me through his words, wrote that “the tendency to equate disability with tragedy keeps us from struggling together for justice and access for people living with disabilities” [p. 31]. I feel this personally; seeing my own situation as a tragedy saps all of my own energy for justice work.

Essayist Eli Clare [in Exile and Pride] movingly describes the hazards of coping with disability by adopting, contrary to the tragedy story, a “supercrip” identity: supercrip, like super cripple, like a disabled Superman. Some supercrips are amazing athletes. Others are people leading ordinary lives that non-disabled people consider extraordinary because they assume disabled people aren't ordinary. Eli Clare climbs mountains despite the immense physical challenge of doing so with cerebral palsy. He says that relying on a supercrip story for self-worth would mean that “achievement contradicts disability” [p. 9], that there is a way to erase disability through effort, to overcome it. “Overcoming has a powerful grip” [p. 9], he says. Reflecting on his decision to turn around before reaching the summit once, he thought, “‘If I used a walking stick, and we picked a dry day and a / different trail, maybe I could make it up to the top of [Mt.] Adams.’ I never once heard,” he writes, “‘You made the right choice when you turned around.’ The mountain just won't let go” [pp. 9-10].

True welcome and honest celebration of diversity doesn't create tragic figures or superheros who survive whatever makes them different from the norm. And it also doesn't ignore difference. Think about colorblindness. Growing up in the 1950s, writer Jane Lazarre was taught that “‘We are all the same, there are no differences between people.’ … attributing brown skin to a Negro,” she writes, “was considered insulting, a revelation of racial prejudice in itself. The obsessive denial that race mattered was obviously a white creation” [p. 25]. The obsessive denial that race matters was something she had to let go of as she grew up to become the white mother of black children.

And it's something UUs are working hard to let go of as we grow up and embrace our multiracial, multicultural, radically inclusive Beloved community. Right here in Oakland, the Black Lives Matter banner and candle are symbols of that work. And the UUA is making some strategic changes in language and practice to let go of racism, ableism, and the gender binary.

A few words about ableism. When Eli Clare decided to turn around on the mountain, his frustration was about physical impairment. There are physical realities that make some things harder for some bodies than others. When he felt like he shouldn't turn around, but be a supercrip with better gear...that was ableism.

Ableism shows up when physical impairment is not only painful, uncomfortable, and disappointing, but detrimental to my value. Ableism shows up when I feel I have to prove my value or when I don't get valued enough by my community to be offered access to social institutions.

Ableism makes me a tragic case or a supercrip in order to avoid including who I really am. We all suffer from ableism when it makes disabled people invisible and we forget to make our communities accessible. During the bridging ceremony last month, no one remembered that it's not easy for all young adults to run to the front of the sanctuary to welcome the bridging teenagers...so I wasn't able to participate. This wasn't an intentional unwelcome. But my value was forgotten.

The UUA’s Standing on the Side of Love campaign reminds us that we are all valuable. When we get together in a big group in a march or protest or city hall meeting wearing our yellow Standing on the Side of Love t-shirts, we are telling the world that all bodies are valuable...even bodies that look terrible in yellow t-shirts. But what about bodies that can't stand?

Ableism has a lot to do with capitalism. There's an exhortation to do. There's a judgement of people based on their productivity, or their capacity for productivity. I've been aware of this and fighting it for a long time, but it was often a practice of choosing to be less productive. I've got considerably less room for that now. There's a push for standardization in our economic system, since quantity is best achieved through interchangeable parts. Now that I'm no longer temporarily able-bodied, I'm not standard anymore.

And this brings me to the struggle for justice for transgender people and LGB people. Our effort to simply be has made us the targets of forces intent on putting us in boxes: male, female, men (who must love women) and women (who must love men). Baba Ibrahim says: “Transgendered people are not in disorder. The disorder comes from a society that is limited to a binary construction of gender and sexuality” [p. 24]. And “if we challenge the notion of a heterosexual majority, if we interrupt a minoritizing discourse, if we acknowledge the fluidities and slippages of sexualities, then there can’t be a majority” [p. 25]! He defines queering as “destabilizing, interrupting the business-as-usual of conceptual and organizational assumption” [p. 18]. I love this. The destabilizing interruption of injury and disability have queered me. I understand that much of my disability is about disabling systems and structures, not my body. I am ever more strong in my solidarity with the UUs who are working to change our conceptual and organizational assumptions. Realizing that “men and women” is disordered language, the UUA General Assembly just agreed to change the wording of the second source of our living tradition to:

“Words and deeds of prophetic people

--people, not men and women--

which challenge us to confront powers and structures of evil with justice, compassion, and the transforming power of love.”

One of those prophetic people is UU minister Theresa Soto. Last year at GA, she sat on stage and held up a sign that said “Ouch!” every time someone used ableist language. This year, she advocated to change the name of Standing on the Side of Love. In her words,

“The definition of ableism is placing a high value on able bodies and low value or no value on disabled bodies. The “Standing” language reinforces that hierarchy by forcing the higher priority of bodies that function by standing in expected ways… One important thing we do when we stop placing external values on other people’s bodies is free them from imposed narratives. We leave people space to tell their own stories… The other way that we confront ableism… is by not making stories of able bodies the only stories.”

In a blog post where I got these words, Theresa Soto lifts up the words of another activist, Ahmie Young, who uses a wheelchair. From the first time she heard about the Standing on the Side of Love campaign, she has felt

“disinvited from participation, just by the name by which it is labeled… With this non-standing body, I have shown up and borne witness when others were too busy…. Others like me are laying their very lives on the line and rolling into congressional buildings, and facing arrest, that all may have access to health care.”

I'm moved by these words. I'm not offended by the “standing” language because I can physically stand, and I find it very empowering to do so. But this discussion makes me feel seen. Because we're learning to listen, we get to hear about other bodies, like when Sarah tells us she's not able to sit easily.

At GA, the decision was made to look for another name. We sang the hymn, Standing on the Side of Love, with new words, Answering the Call of Love, with a persuasive introduction by the composer Jason Shelton. I'll invite you to do the same in a few minutes.

Once the words are changed, this conversation will be over. New UUs singing the hymn with new words and people encountering our public advocacy campaign under a new name won't know the history. This moment is for us to grow and change and become a place of deep welcome, where it's commonplace to greet a newcomer with a deep curiosity about what brings them to us. It's not about institutional change, but rather about how this institution can support a change in our hearts.

This means letting go of the idea of “normal” … and it changes everything. It goes beyond the human body and into the interdependent web of all existence: the inherent worth and dignity of all people, and all the sacred beings that make our life possible.

Here are the words of Eli Clare again:

“The standards called normal--sometimes in tandem with natural--are promoted as averages. They are posed as the most common and best states of being for body-minds. … And at the very same time, these standards, which supposedly reflect some sort of collective humanity, are sold back to us as goals and products.” The medical-industrial complex sells us ideas of “normal weight, normal walking, normal ways of thinking, feeling, and communicating,” while multinational corporations sell us “natural beauty, natural strength, natural skin everyday.” Meanwhile, “white Western beliefs separate human animals from nonhuman nature and devalue the natural world. Coupled with capitalism, these beliefs drive an out-of-control greed for and consumption of coal and trees, fish and crude oil, water and land. … In short, the white Western world both desires to be natural and destroys what is natural, depending on the context. It makes no sense” [Eli Clare, Brilliant Imperfection, p. 173].

I believe that as we follow this discussion, we'll come to agree on the inherent worth and dignity of all beings, not just people. All beings. This is the goal of the First Principle Project, a group of UUs who want to make the first principle of our faith less anthropocentric. At GA, they were at the top of the agenda. And they did something amazing. They stood down. Aware of the deep conversation around Black Lives Matter, and the proposal for an eighth principle that explicitly endorses antiracism and Beloved Community, they tabled their initiative so that we can have a comprehensive investigation of all our principles. The eighth principle initiative passed. This doesn't mean we have an eighth principle; it means we've formally agreed to think about it. The conversation is happening. The conversation is now.

To bring your full self into the conversation, give your body some attention as we get ready to sing together. If you're comfortable seated, please stay seated. What would it mean to Stand on the Side of Love while sitting in a chair? What would that feel like? How might you rise in spirit, without coming to your feet? If “standing” is just a metaphor, how do we do it while seated? Reflect on that for a moment. [Walk to the lower Mic, and sit down.]

When we sing, we'll use the original words for the first chorus: “standing on the side of love.” For the second and third chorus, we'll use “answering the call of love.” Don't worry, it's on the slides!

For the first verse, I'll invite you to stand in spirit, but not in body. This means: if you're able, keep your butt in your chair.

When we get to the second chorus, I'll invite you to rise in body or spirit. How do you want to rise? Are you able to stand up? Do you want to? Let your own body inform you what rising means, when the moment comes.

Tuesday, June 12, 2012

In response to the article about my insurance battle in the Sacramento Bee, my boyfriend wrote a letter to the editor which was published today. We're all thinking about health care costs, and how they can be reduced--he argues that instead of denying treatment to those in need, the health care system should "cut the fat" from administrative costs.

Meanwhile, in Houston, I met the invaluable member of MD Anderson's Proton Therapy Center administration who crafted my first appeal to Anthem. Trained and experienced in nursing, Ms. H has spent the past several years specializing in "denials management," and enjoys a 60% success rate. When I read her appeal, I could not fathom how Anthem would reject it--and I quoted it in the appeal that eventually won. In addition to writing appeal letters, Ms. H spends a lot of time on the phone with insurance companies. Her medical credentials allow her to talk with the nurses and doctors protected from the public by customer service. These professional links are often crucial for the success of an appeal.

Patients facing insurance rejections are usually alone, and this is terribly costly on a personal level. Some, like UC Davis employees, have an advocate hired by their employer. Patients recommended for proton therapy at MD Anderson have Ms. H, but no other center within MD Anderson has such specialists. Most of us choosing to fight insurance denials have to draw from our own resources in a time when our attention should really be going toward other activities, like healing, packing up and moving to the treatment location, and getting in touch with friends and family for support. If our society can find a way to "trim the fat" that results in battles between insurance companies and the people they claim to serve, then the patients will do a better job "building our muscles" for the more important battles we fight against our diseases. Meanwhile, people like Ms. H, who have both medical training and a passion for getting patients the best treatment, can use their professional links to identify and access treatment options rather than wade through paperwork.

Monday, June 11, 2012

In my first post, I published the cover letter of the winning appeal. Here is the rest of the letter.

Why My
Condition Requires Proton Beam Therapy (PBT)

Proton radiotherapy is the preferred
treatment modality for Ms. Call’s life-threatening malignant paraganglioma of
the left carotid body. The targets will include the left neck to the base of
the skull. Protons will minimize dose to the surrounding critical structures
including the spinal cord and brainstem… Proton beam irradiation therapy will
be particularly beneficial for Ms. Call given her young age of 28 years old and
long life expectancy. (Dr. Adam Garden, M.D. Anderson Radiation Oncologist,
Appeal letter to Anthem, May 11, 2012)

Within days of my diagnosis with this rare cancer, I met
radiation oncologist Dr. Allen Chen at UC Davis Medical Center. As lead author
of nine recent papers on head and neck cancers—two studies comparing different
radiation treatment types, a study on radiation beam location and implications
for tissue damage, and a study on IMRT outcomes for unknown cancers—he is among
the top physicians in his field and uniquely qualified for work on rare tumors
such as mine. Given the exceptional nature of this case, however, he quickly
reached out to other colleagues in the radiation oncology community. It was
under Dr. Chen’s encouragement that I sought a second opinion at M.D. Anderson.

There I met Dr. Adam Garden, who first introduced me to
Proton Beam Therapy (PBR). Also specializing in head and neck radiation
oncology, Dr. Garden has published eight articles on the detrimental side
effects of radiation therapy. As I learned from Dr. Garden, PBR should minimize
the risk of both acute and chronic side effects, including secondary cancers
and damage to important structures in my neck, head, and jaw. With this
information, the decision to pursue PBR was easy.

Anthem’s recommendation to the University of California to deny
coverage for PBR is based on the claim that the medical reviewers have not seen
any medical studies that show that PBT is as good as other treatments for my
condition. Since immersing myself in the literature, I can only conclude that
Anthem, acting on behalf of the University of California, simply has not
looked. The evidence for PBR’s effectiveness for head and neck cancer—indeed
its superiority—is overwhelming. I
believe that on a more thorough review of the literature, Anthem would overturn
its previous recommendation to the University.

For example, Yoon, et al., (2010) compared IMRT and proton
therapy for patients with head and neck tumors, prostate cancer, and brain
tumors. They found that for head and neck treatment there was a lower relative
secondary cancer rate for all organs, even for the thyroid gland, with PBT.
Purdy (2008) explains that relative to IMRT, PBT reduces the radiation dose to
healthy tissue and the risk of leakage and scattered radiation. In a study of
conventional radiotherapy, IMRT, and PBT, Palm and Johansson (2007) find that
“the data consistently show that proton beam therapy substantially decreases
the OAR [organs at risk] average dose compared to the other two techniques.”
Metz (2002) reaches a similar
conclusion: “Side effects, both acute and long-term, typically seen with
X-ray therapy can thus be markedly reduced with proton beams due to the sparing
normal tissues that are situated around the tumor. These considerations are
directly related to the physical characteristics of the proton beam, and
require no demonstration or study. However, data are available from clinical
series that support them.”

In addition to the physical benefits I expect from receiving
PBT instead of IMRT, there is strong evidence that it will reduce my long-term
healthcare costs as well. Lundkvist, et al., (2005) conduct a cost-benefit
analysis and estimate that a patient of 65 years would spend over $5000 less in
dental bills over her lifetime (in 2012 dollars) by choosing PBR over IMRT. This
number would be substantial higher for me, since at 28 I have a longer life
expectancy, and it does not include any valuation of quality of life or
non-dental health-care costs. The long-term cost-savings and quality-of-life
benefits of proton therapy are discussed by Pijls-Johannesma, et al., (2008),
who write that “It is expected that in the long run, due to a decrease in the
absorbed integral dose, fewer secondary cancers will be induced. Also, due to
the expected decrease in side effects and increase in tumor control probability
(TCP), it is expected that long-term costs will decrease as a result of less
hospitalization, less palliative care and improved quality of life.”

Another head and neck cancer patient, Steve Harris, recently
sought proton treatment at M.D. Anderson. Although his application for
insurance coverage was initially denied, his appeal was upheld. According to the radiation oncologist who
treated Harris, “It's important to minimize any other side effects that can
occur… With head and neck cancer, you’re close to the centers that affect taste
and smell, the swallowing function, and day-to-day speech” (Work, 2012).

M.D. Anderson is not alone in supporting patients seeking
PBR. In fact, “to most radiation oncologists and physicists, the benefit of
proton therapy in many clinical cases is without question; protons allow
sparing of normal tissue, which is unarguably beneficial to patients. Indeed,
to a radiation oncologist experienced in delivery of proton therapy, the
decision of whether or not to employ it in a given case is analogous to a
surgeon’s decision regarding the choice of a particular scalpel or cautery
device”’ (Hill-Kayser, et. al, 2011).

The Term "Investigational" Has No Meaning When Applied to a Rare Cancer

Ms. Call should not be denied the
options available for this treatment of her malignant paraganglioma of the left
neck. Proton therapy is the best and only treatment option and medically
necessary for Ms. Call considering her age of 28 years and her prior
surgical/treatment history. (Dr. Garden, Appeal letter to Anthem, May 11, 2012)

For my case, PBT is no more “investigational” a procedure
than the IMRT therapy that Anthem is recommending the University of California offer.
An investigational procedure, according to my Benefit Booklet, is one that is
“not widely accepted as proven and effective within the organized medical
community.” Anthem’s dismissal of my request for PBR on these grounds is
problematic in several respects. First, as is detailed throughout this
document, the organized radiation oncology community strongly supports the use
of PBR for cancer treatment. Second, the rarity of my cancer and my young age
relative to most radiation patients preclude the identification of a “proven
and effective” treatment for my condition. Finally, advancement of the state of
the art in radiation therapy has never relied solely on clinical trials. IMRT,
for instance, was “widely adopted without comparative trials based on the same
type of surrogate dose distribution modeling that supports the case for proton
therapy” (Robert L. Foote, MD, Professor of Radiation Oncology, Mayo Clinic, as
quoted in Morgan, 2009). Proton therapy for prostate has also been considered
investigational (Suit, et al., 2008), but patient Paul A. Morgan was approved
for treatment by Independence Blue Cross despite the lack of Randomized Phase III Clinical Trials comparing proton
therapy to photon beamtherapy.

Awaiting results on clinical trials in a case like mine raises
ethical issues. In a particularly relevant recent article in the International Journal of Clinical Oncology,
a leading journal for peer-reviewed papers on newer treatments, Ogino (2012)
challenges the ethics of demanding clinical trials as criteria for coverage of
care, especially for “rare malignancies … where the limited number of patients
may not enable randomized clinical trials to be conducted. Therefore, a
clinical decision regarding the optimal treatment should be taken even though
the highest level of evidence may not be available.” As in the cases discussed
by Ogino, my tumor’s life cycle is unknown and its rarity makes clinical trials
infeasible. Anthem argues that “medical studies we have seen do not show that
it is as good as other treatments for your condition.” Unfortunately for both
me and Anthem, there are no studies of my condition. However, Chan (2006) studies
another rare head and neck tumor and finds that it was more responsive to PBT
than IMRT.

These ethical considerations are discussed in other top
journals in the field as well. In the Journal
of Clinical Oncology, Goiten and Cox (2008) make the following strong
argument: “Although we can understand (though
not necessarily agree with) the desire to rely on RCTs to establish the
advantage of a superior therapy, we ﬁnd it totally unacceptable to insist on
what we judge to be unethical RCTs purely to establish the ﬁnancial cost-effectiveness
of an admittedly better technology—nor would patients, if fully informed,
consent to participate in such studies.”

The most persuasive voice in my case, however, is that of my
own radiation oncologist at M.D. Anderson. As he wrote in his appeal to Anthem,
“proton therapy is FDA-approved and is neither investigational nor
experimental. It has the potential to expedite patient recovery after
treatment and reduces the potential morbidities that may result from
irradiating surrounding organs with more conventional techniques such as x-ray
therapy. This approach minimizes toxicity to the patient and results in a
more rapid recovery resulting in less cost to her (as the patient) and to you
(as her insurer). Specifically, proton therapy will be an outpatient
treatment, and will not require hospitalizations due to disease or
treatment-related side effects.”

Reducing
My Radiation-Related Side Effects Is Medically Necessary

PBT is medically necessary for the treatment of the rare
malignant tumor in my left neck because this treatment would deliver less
radiation dose to the surrounding healthy structures than any other treatment
option. The effects of radiation are
detrimental—this is precisely why radiation will be used to target my
tumor. But if Anthem and the University
of California refuse to approve the recommended PBT treatment, I will be forced
to undergo IMRT, a less suitable form of radiation that will unnecessarily
expose my submandibular (salivary) glands, oral cavity, spinal cord, and brain
stem to radiation.

As explained in greater detail below, leading experts in the
field have determined that PBT is a less risky form of treatment for me, and is
medically necessary for my treatment.
PBT likely will cause far fewer serious side effects than IMRT,
resulting in significant improvement in quality of life, and it carries less
than half the risk of secondary malignancy.
For all of these reasons, I request that Anthem and the University of
California reverse the decision to override the recommendation of the
experienced head and neck cancer specialists, and immediately authorize my treatment
with PBT.

Leading
experts in the field of head and neck oncology determined that PBT is medically
necessary because it is the safest treatment option for the malignant
paraganglioma in my neck, based on factors specific to my tumor.

I was fortunate enough to be evaluated by leading experts in
the field at M.D. Anderson, one of the nation’s foremost comprehensive cancer
treatment centers. Dr. Garden is a graduate of Johns Hopkins Medical School and
Board Certified Radiologist with 24 years of medical experience and practice in
Radiation Oncology. He specializes in
the treatment of cancers affecting the head and neck and has published at least
30 peer-reviewed original research articles addressing the treatment of these
cancers. Based upon my specific case
factors and the risks of radiation-related side effects, Dr. Garden determined
that PBT is medically necessary for me:

Proton beam radiation therapy has shown to
deliver less radiation dose to other critical structures; in Ms. Call’s case
this would include the surrounding organ/tissue
structures of the left neck, spinal cord and brainstem, where pared to
x-ray treatment, including intensity modulated radiation therapy (IMRT). We strongly feel that it is medically
necessary that Ms. Call receive proton therapy for treatment of her
life-threatening malignant paraganglioma of the left neck.(Appeal letter to Anthem, May 11, 2012)

The medical opinion of Dr. Garden should not be disregarded
simply because of a lack of documentation in the medical literature on the
treatment of my specific condition. The
medical evidence concerning the substantial risk of harm arising from treatment
of the head and neck with IMRT are clear.
It is well-documented that PBT eliminates many of these risks. For this reason alone, Anthem should follow
the recommendation of the medical experts, and authorize my treatment with PBT.

PBT
will cause fewer serious side effects than IMRT, resulting in significant
improvement in my quality of life.

“Treatment-related toxic effects of radiation therapy for
head and neck malignancies can be severe” (Slater, 2006). The radiation exposure to the areas of my
head and neck surrounding the tumor will likely cause both short- and long-term
side effects. As a 28-year old soon-to-be cancer survivor, the detrimental side
effects of IMRT could negatively impact my quality of life and my ability to be
fully productive in my fieldwork for decades to come.

The decreased exposure to radiation through treatment with
PBT is significant in cases involving malignancies of the head and neck. “With PBT, unnecessary dose to the adjacent
normal head and neck structures can be limited, resulting in significant improvement
in quality of life during and after treatment”(Slater, 2006). PBT’s unique ability to target the tumor
provides radiation oncologists with the means to deliver higher radiation doses
to the target, improving chances of eliminating tumor cells, while
significantly reducing radiation doses to the surrounding tissues, resulting in
fewer radiation-related side effects.

IMRT causes more serious damage to critical organs than
PBT. In my case, submandibular
(salivary) glands, oral cavity, spinal cord, and brain stem are located in the
area surrounding the tumor bed, and would receive excessive radiation should
Anthem limit my treatment options to IMRT.
A 2007 medical study compared dose
distributions and impacts between PBT, conventional radiotherapy, and IMRT
(Palm and Johannson). This study found
that proton therapy substantially decreases radiation to nearby organs compared
to conventional radiotherapy and IMRT, while providing improved dose
distribution in non-target tissues. The
reduced radiation can preserve organ function, significantly reducing the risk
of normal tissue complications and secondary malignancies.

Two specific side effects arising from irradiation of the
head and neck region are acute mucositis (painful inflammation and ulceration of
the mucous membranes lining the digestive tract) and acute and chronic
xerostomia. Radiation treatment that is
focused near the salivary glands may inflict temporary or permanent damage.
Xerostomia occurs when the salivary glands do not make enough saliva, producing
“serious negative effects on the patient’s quality of life, causing
difficulties in tasting, chewing, swallowing, and speaking” and can lead to
dental problems including causing mouth infections, sores, cavities, tooth
loss, and gum disease (Lundkvist, et al., 2005).

The side effects of the course of treatment I am provided
affect the efficacy of the treatment.
This is not solely a matter of eliminating my tumor. The preservation of critical bodily functions
also is important.

PBT
carries less than half the risk of secondary malignancy caused by the radiation
treatment.

The decreased exposure to radiation through treatment with
PBT has a substantial effect on the risk of secondary malignancy. A comparative analysis of secondary malignancy
risk in 503 patients treated with proton therapy between 1974 and 2001 versus
1591 matched treated with conventional photon therapy, revealed a significantly
lower risk of second malignancy after proton radiotherapy when compared with
photon radiation therapy (Chung, et al, 2008).
Moreover, after adjustment for clinical and demographic variables,
traditional photon radiation therapy was associated with almost a three-fold
greater risk of second malignancy.

The reduction in secondary cancers has been specifically
documented in the treatment of head and neck cancers (Yoon, et al., 2010).
In the medical literature, compared with IMRT, treatment with PBT for head
and neck tumors carries a lower relative secondary cancer rate for all organs.

It is unethical to disregard the documented
tissue-sparing effect of PBT—resulting from the inherent characteristics of the
proton beam—simply because there is a lack of medical literature
documenting its application to rare malignant carotid body tumors such as
mine.

PBT’s sparing of normal tissue is well documented in the
medical literature, including in the treatment of head and neck cancers. For
rare malignancies like mine, where the limited number of patients does not
enable randomized clinical trials to be conducted, it is unethical to deny
treatment as investigative simply because the highest level of evidence is not
be available. The well-documented tissue-sparing effects of PBT result
directly from the physical characteristics of the proton beam (Metz, 2002). Anthem
and the University of California should not require proof of the impossible:
that the documented tissue-sparing effect applies equally to
malignant carotid body tumors. The tissue-sparing effect
is unambiguous. PBT would spare the tissues surrounding the
tumor in my neck from unnecessary damaging radiation. The
recommendation of the head and neck specialists who evaluated my tumor have
cited this tissue-sparing effect as supporting their determination that PBT is
the optimal treatment for my condition. This recommendation should
not be disregarded. It is unethical for Anthem to authorize only a
treatment that carries a documented significantly greater risk of harm to my
submandibular glands, spinal cord, and brainstem when the less risky treatment
option of PBT could be made available to me.

Anthem
has justified authorizing PBT for other cancers based on these factors. The
same authorization is justified here.

Anthem’s own policy, justifying the use of PBT:

Anthem considers Proton beam radiation therapy “medically
necessary” for the initial monotherapy radiation treatment of
localized prostate cancer. … This is based on evidence that demonstrates that
PBT is able to deliver higher doses of radiation to a targeted area while
decreasing exposure to adjacent healthy tissue. (Policy #: RAD.00015)

Anthem’s policy justifying PBT coverage for prostate cancer
uses the same reasoning that should be used in my case. It appears that the
only reason that prostate cancer would be covered when my cancer is not has to
do with my cancer’s rarity. Indeed, PBT
is also offered for CNS lesions whose pathologies similar to mine: a) close to
delicate, nonhealing and crucially functioning parts of the anatomy and b) not
a whole body metastasis which would make such an expensive and focused
treatment futile.

In sum, the increased radiation-related side effects
resulting from treatment with IMRT are clearly established. These consequences are not insignificant, but
have the potential to affect the quality of my life for the next seventy-plus
years. Because PBT will leave me with
fewer serious side effects than IMRT, PBT is medically necessary for me.

Anthem
and the University Have Caused Dangerous Delay

When first considering proton therapy in late April, I
called Anthem customer service to verify that it would be covered. The
representative told me that it would be, so long as the procedure was
FDA-approved. M.D. Anderson’s proton
therapy facility has been operating with FDA-approval since May 2008 (Matsuda,
et al., 2009). I reached out to friends to set up lodging for me in Houston and
prepared to leave home for the six to eight weeks of treatment. Since then, I
have been waiting for confirmation daily.

Receiving Anthem’s denial was unexpected, and navigating the
appeals process under this time pressure has been extremely confusing and
anxiety producing. My Benefit Booklet specifies that “Only
the Peer Clinical Reviewer may determine that the proposed services are not
medically necessary and appropriate.” He or she must be “licensed in California
with the same license category as the requesting provider.” If my request for
treatment is denied, the denial letter should include the name and telephone
number of the Peer Clinical Reviewer who made the decision. It did not.
The letter includes the name of the medical reviewer who made the determination
not to approve PBT (Steven Rosenblum) as well as the Medical Director (Gil
Solomon), but neither are board certified in radiation oncology or experienced
with diseases of the head and neck.

Dr. Garden appealed Anthem’s denial on May 11. Both he and
Dr. Chen recommended that my therapy start four to eight weeks after surgery,
i.e. no later than May 16. I was not able to obtain documentation of Anthem’s
decision to deny Dr. Garden’s appeal until May 23. Again, the outside doctor is
unnamed. I called Anthem to request his or her name and written opinion, but
was told I would have to wait up to thirty days. If I had to wait thirty more days, I would
receive the relevant information on June 22, more than five weeks after the
8-week maximum post-surgical wait prescribed by the experts who treated me. Anthem and the University of California are
asking me to choose between submitting to more harmful and less effective
treatment without making available their reasoning for doing so, and putting my
life in danger by further delaying treatment.

Whereas the doctors recommending PBT for my treatment are
highly qualified practicing radiation oncologists, those denying my right to
the treatment have unclear qualifications.Furthermore, by restricting access to
information about the outside reviewers, Anthem has violated its own policies.
Meanwhile, each additional day of delay in approving my treatment reduces my
chances of beating this cancer. I urge Anthem and UC officials to immediately
overturn the denial and grant me the care I need to survive.

References

Armstrong, D. (2011). Proton-beam radiation therapy
and health-related quality of life in children with cns tumors. Journal of
Clinical Oncology, 30:1–2.

Palm, Å. and
Johansson, K. (2007). A review of the impact of photon and proton external beam
radiotherapy treatment modalities on the dose distribution in field and
out-of-field; implications for the long-term morbidity of cancer survivors.
Acta Oncologica, 46(4):462–473.

Friday, June 8, 2012

My
cancer journey began nine months ago when I decided that despite a previous
doctor's dismissal, the persistent lump in my neck was not just a swollen lymph node. Since
then, I've traveled down this path alternately fearful, uncertain, brave, curious, angry, in
pain, nauseous, grateful and--over the past
month--investigational. This last term was a gift from my insurance company,
intended to describe the treatment my doctors prescribed rather than me
directly. But throughout my battle with Anthem, it has permeated my experience.
My tumor was very rare, and it had a tiny, tiny chance of being malignant. When
the pathology report came back and I had to make some tough decisions, I
realized that statistics were not going to save me. Anthem, however, did not
want to pay for anything not backed by solid statistics. Refusing to fall
through their cracks, I turned the term "investigational" back on
them and asked: "What isn't investigational
for my condition?"

Now that
I've won my fight with Anthem, I realize that an investigational spirit is one
of my best weapons in both my fight for insurance coverage and my fight against
cancer.

I'll be
in Houston for the next eight weeks, mostly alone with my disease--and my
computer. I intend to spend this time not only eating well and making jokes
with the technicians as they zap me. Mostly I'm treating it as a chance to
explore what brought me here and where to go next. I'll be searching medical
journals and news articles, reading other blogs, and reaching out to fellow
students who have learned similar lessons. Here are the questions I'm starting
with:

How rare is my condition, and
how have other people in my shoes dealt with it?

What defines a rare condition
in the medical community, and how do the best doctors come up with good
treatment plans? How is good research done despite small sample sizes?

How rare are rare conditions?
How are they treated by the insurance industry--and why?

What makes student insurance
different from other insurance types? Who is available to support us?

I am a 28-year-old female PhD student at UC Davis with a
carotid body tumor (paraganglioma) in my neck. The bulk of the tumor was
surgically removed on March 21, 2012, but the remaining tumor was found to be
malignant. Anthem’s continued recommendation to the University of California to
deny coverage of the recommended post-surgical treatment must be resolved
immediately to give me the best chance for a full recovery.

To avoid further spread of the cancer, my doctors have
recommended Proton Beam Therapy (PBT), which is the most effective, least
damaging, and ultimately lowest lifetime-cost treatment for my case. My doctors
have referred me to M.D. Anderson, a world-renowned center for PBT, and
recommended I begin treatment between four and eight weeks of my surgery date.
(Nine weeks have now passed.) However, Anthem, acting on behalf of the
University of California, has denied my request (and M.D. Anderson’s appeal)
and offered an inferior, higher-risk treatment, Intensity Modulated Radiation
Therapy (IMRT), instead. PBT has an estimated cost of $160,000, compared with
IMRT costs of $50,000 to $100,000.

I have requested this treatment, and Anthem and the
University of California have denied it on the following grounds:

Anthem
has not seen any medical studies that show that PBT is as good as other
treatments for my condition.

PBT
treatment is “investigational” for my case.

My tumor is so rare that there is no standard course of
treatment, other than to follow the general approach of eradicating the tumor
with radiation therapy. Because of the rarity of this cancer, there have
never been and there will never be a sufficient number of cases to perform a
study of the relative benefits of differing radiation therapies. However, there is substantial study (which I
cite below) on the damage radiation causes to healthy organs and tissue,
especially in parts of the body such as the neck where the tumor area cannot be
irradiated without also irradiating delicate, nonhealing, and crucially
functioning parts of the body.

At M.D. Anderson, one of the nation’s foremost comprehensive
cancer treatment centers, I was seen by Dr. Garden, a graduate of Johns Hopkins
Medical School and Board Certified Radiologist with 24 years of medical
experience and practice in Radiation Oncology. Dr. Garden specializes in
the treatment of cancers affecting the head and neck and has published 42
peer-reviewed original research articles addressing the treatment of various
head and neck cancers.

According to research by Dr. Garden and others, conventional
radiation treatments damage the tissue surrounding the tumor, in part because
the radiation release is greatest at surface. Proton beams, by contrast,
can be much more finely controlled, both in width and depth, allowing doctors to
more accurately target the tumor area. Thus, the proton beams can deliver
higher doses of radiation to the tumor area with less collateral damage to the
surrounding healthy tissues. By pursuing PBT instead of IMRT, I will have
a lower risk of developing secondary cancers resulting from the radiation,
permanent neck stiffness resulting from the scar tissue, damage to my brainstem
and spinal cord, the loss of salivary glands near the tumor, and subsequent
major dental problems. If I receive IMRT, these side effects are likely to negatively
affect my productivity and quality of life for decades.

Despite the proven benefits of PBT (Allen, 2012; Yoon, et.
al., 2010; Mock, 2004, among others), and even though the therapy is approved
for the treatment of more common forms of cancer which require very precise
irradiation, Anthem determined that the treatment would not be covered because
it is considered “investigational” for head and neck cancer due to insufficient
clinical data. Again, please note that it is impossible for “sufficient
clinical data” to be amassed for any treatment with my rare condition. Anthem will only cover the conventional
radiation treatment, risking my short and long-run health and likely increasing
my long run health care costs.

However, unlike Dr. Garden, who recommended PBT, as well as
Dr. Allen Chen at the UC Davis Medical Center who strongly supports his
recommendation, the Anthem reviewers who recommended the University of
California deny coverage have no experience with cancers of the head and neck.
Neither the consulting doctors’ credentials nor their reports are disclosed, in
violation of Anthem’s own policy. Instead, the denial letter inconveniently
offers to disclose the pertinent information within 30 days of any request.
The insurance appeals process has taken over 4 weeks already, and I
simply cannot delay my treatment to wait for the report. The longer I wait
before starting treatment, the more likely it is that cancer cells have spread
to parts of my body outside the radiation field.

In this document I will prove the
following:

PBT is the best therapy option for me and is medically
necessary in my specific case.

PBT will leave me with fewer serious side effects than IMRT,
both during treatment and over the rest of my life. The relevant side effects
are: acute mucositis, acute and chronic xerostomia, second malignancies, and serious
damage to critical organs including my submandibular (salivary) glands, oral
cavity, and brain stem.

Leading head and neck radiation oncologists have recommended
PBT for my case.

There is a great deal of evidence supporting PBT for head
and neck cancers.

PBT will result in lower health care cost for me over my
lifetime.

For my particular case, PBT is no more “investigational” a
procedure than the IMRT therapy that Anthem/UC is offering.

The specific doctors Anthem consulted in making the decision
to recommend denying me this treatment are not qualified to make this decision.

Other major insurers cover PBT for neck cancers.

Anthem has violated their own procedures in denying my PBT
treatment.

Any further delay in approving this treatment reduces my
chance of beating this cancer.

I appreciate your time and
attention to the careful review of my urgent expedited appeal. I know that Anthem
Blue Cross strives to work with the University of California to deliver the
best coverage to students. According to my school website, “UC SHIP benefits
are designed with the well-being of students in mind, to optimize each
student's opportunity to complete his or her education in a state of good
health, while reducing the impact of medical costs.” I believe the
evidence presented here will bring to light the crucial issues in my situation
which make PBT the only option to ensure I have the best chance at a long
healthy life.